Hello everyone! This is my first post. I’d just like to say I’m so glad I found this forum and would like to thank all the people who have shared their knowledge and experiences. It’s given me a sense of hope that there are other options to explore. I was prescribed Betahistine in 2018 when I got my diagnosis of Ménière’s (left sided). I take 8mg three times daily but double up to 16mg at the first sign of any symptoms flaring up. From reading other people accounts of this awful condition I consider myself very fortunate that I’ve had some very long periods of remission between my flare ups. However each flare is worse than the one before. The vertigo attacks started again in March and have been the worst I’ve known. I’ve been both distraught and terrified. At one point I was having violent vertigo attacks every 12-24 hours. I frequently couldn’t keep anti-sickness tablets down. I eventually managed to get hold of Buccal tablets but they seem to take a long time to work! The attacks have recently reduced in frequency to between one and three times a week. Some are much milder but I’m still getting my fair share of nasty ones! I’m waiting patiently for remission to happen, and trying my best to cope, which at times is hard. My GP was initially keen to refer me back to ENT, but during our follow up appointment a couple of weeks later, she’d decided she wasn’t going to refer me, because, in her words, “there’s nothing they can do for you anyway so you’d only end up disappointed”. She also said there had been a review on Betahistine that had determined it’s not effective for Ménière’s, and asked me how I’d feel about stopping it. I declined. While it’s evidently not keeping my Ménière’s under control, I’m afraid to stop…just in case it makes things worse! I’ve been taking 16mg 3 x daily since last September (when the fullness returned and my hearing declined considerably), so it’s definitely had sufficient time to build up in my system. I have come across a number of anecdotal comments online of people who take high doses of Betahistine (72 - 96mg per day and even higher) and get good results. I’ve found a few studies that have found higher doses to be effective: High-dosage betahistine dihydrochloride between 288 and 480 mg/day in patients with severe Menière's disease: a case series - PubMed High dose betahistine as effective as, but slower acting compared to intratympanic dexamethasone in intractable Meniere’s disease https://www.tandfonline.com/doi/abs/10.1080/00016480701724912?journalCode=ioto20 I looked into John of Ohio’s regimen during my last flare up and started taking the Lemon Bioflavonoids and MSM, but went into remission shortly after and didn’t pursue the other supplements (I continued with the LB’s and MSM). I’ve just worked my way up to 3000mg of L-Lysine over the last month and will be introducing the other components over the coming weeks. I’m open to the idea of trying a higher dose of Betahistine depending on how I get on with the JOH regimen over the next few months. I’m going to ask a different GP if they will re-refer me to ENT. I appreciate most GP’s and consultants are not happy prescribing off-label doses, but I understand a small proportion will, it’s just a case of finding them! Has anyone in the UK managed to find an ENT consultant who will prescribe higher doses of Betahistine? I would welcome any suggestions or shared experiences regardless of location. Thank you for reading!
Hey Emmy, I have bilateral MD and since using the JOH regimen and betahistine 24mg 3 x daily I have not had a vertigo attack since 2017 and only had some mild dizziness in April 2020. My original prescription was in the U.S. but when I moved to the UK in 2020 my GP agreed to keep me at the same dosage. Since betahistine comes in boxes of 8mg or 16mg in the UK, they can prescribe you any amount they want in multiples of 8. In Canada they sell the betahistine in boxes up to 24mg last time I checked. I did make an effort to taper down my betahistine dose in 2019 after using the full JOH regimen for about a year but dizziness returned so I got back on betahistine at my last prescription of 24mg every 8 hours and have been functional since. Maybe your GP would support a gradual increase (8mg per month) in your betahistine use until your symptoms improve instead of asking for a jump from 16mg 3 times a day to 48-96mg 3 times a day. Just an idea….
Hi arcticblueice, I’m glad you’re now doing well and have had such good relief with the JOH regimen and 24mg Betahistine. Do you still take a maintenance dose of any of the JOH supplements? I’d definitely want to try the smallest dose increase possible to start with so I apologise if I gave the impression that I wanted to try a really high dose straight away! As I’m planning on seeing a GP to discuss an ENT referral there would be no harm in asking them if they could prescribe a slightly higher dose as you suggested. Maybe they’ll surprise me! The worst they can do is say no and then I assume the decision would have to be passed on to ENT anyway…
Hello. I am UK based and after an awful ENT experience I went for a second opinion with Professor Simoin Lloyd (Professor Simon Lloyd: ent specialist in Wilmslow) who has put me on high dose Betahistine along with a variety of other drugs specific to my experience. My experience with him after two meetings has been extremely positive and I would recommend him.
Hi Terratag, Thank you for your recommendation. Strangely enough I asked to be referred to Prof Lloyd for a second opinion in 2020 after an unsatisfactory experience with the ENT clinic in my local area. I never heard anything - I don’t know if it was refused because I’m out of area or the referral letter never made it there! Did you see him via the NHS?
Hi Emmy I am sorry to hear you have been suffering a lot. I took betahistine and I was prescribed high doses by my audiologist at the hospital. They (betahistine tablets) made no difference to me. Please ask your GP to refer you back to ENT. There are many options to be explored and I cannot understand why your doctor said what they said. Where are you based in UK? There is a great Meniere’s specialist at St George’s hospital in London. Please don’t allow your GP to give up on you. All the best
I am very fortunate to have private health insurance - but as I learnt with my first ENT money doesn't equal quality of care. The first ENT I saw was at a SPIRE hospital and frankly he didn't seem interested in helping me, patted me on my back with nothing in the way or care or treatment discussed. Professor Lloyd so far has been helpful and responsive but I imagine that's par for the course with private stuff - all my dealings with my GP tell me the system is broken in the UK!
Hi Marta, Sorry to hear the high dose Betahistine didn’t help you. How are you doing these days? After a wonderful two weeks without any vertigo attacks I had a week of daily attacks last week. I’ve got an appointment in a couple of weeks with the GP who dealt with me during a flare up in 2020. She was happy to refer me to ENT and didn’t hesitate when I requested another referral for a second opinion. Thank you for the recommendation for St George’s Hospital. I’m in Lancashire but if I can’t find any help locally I’m prepared to travel if it means seeing the right specialist! What was the name of the consultant you saw there? Take Care
Hi Terratag, Your experience at the Spire sounded truly awful, and to think the consultant will have been paid very well to do nothing for you! I have an appointment booked with the GP who made the original referral to Prof Lloyd. I’m hoping she can shed some light on what happened last time and perhaps try again if appropriate.